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Thursday, September 22, 2011

I'm just a little bit...

FRUSTRATED.

It feels as if we are at a stand still... and all I want is just a little relief for my baby.

I'll start by very briefly explaining the new drug I mentioned in my last post. It's called G-CSF (that's actually the classification). It is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing a certain therapy that will lower your white blood cell counts. This medication is used to prevent infection and fevers caused by chemotherapy. I know of it as being used before the Bone Marrow Transplants in EB kids. If I understand correctly, it's used about 5 days prior to starting the transplant. Some EB patients that took this prior to their transplants started feeling better within the next day- their mouth healing, skin clearing up, etc. But then the transplant began after the 5 days...

Now there is no data on this drug being used just to help stimulate "healing" in the mouth, esophagus, or skin. It's never been used in this way before. Now most of you know that some of the children that made it through the transplants are doing okay, but some of them are worse than before the transplants. Most every one is different. One of the transplant patients started the G-CSF strictly to "see what it would do," and had some good results within a few days, but then had to stop it due to a secondary infection.

And if you know me... you know that I want this drug like yesterday. I mean, what do we have to lose, right? My baby's time clock is ticking...

So another super EB mommy got me in touch with this doctor and I practically begged him to let us try it on Tripp. He was so nice. I felt like he really cared and he was really willing to help us. The problem is that this is brand new and no one knows short term or long term side effects of using this drug in this way. AND he doesn't think the drug will do anything as long as Tripp is on steroids (which he's been on for about 2 years now). And the steroids are difficult to taper off when you've been on them for so long. But he told us that if I could do a viral swab in his mouth (and make sure the herpes virus wasn't lingering around in there again), try and taper his steroids down to about 2 mls, and draw some baseline labs on him... then we could talk about it. So between me, Dr. Defusco, and our SUPER great and wonderful home health nurse, Kati Corso- we got the swab done and the labs drawn. And I had already begun tapering his steroids.

Viral swabs were negative (I guess that's one good thing), but his breathing starting getting wheezing when I started tapering his steroids, and his blood work was all over the place. Electrolytes were up and down and crazy numbers... and he was more anemic than any blood work has shown before. Go figure. My excitement turned to disappointment really fast.

Dr. D thinks I may have tapered his steroids too fast. Which I probably did in the excitement of actually being able to try a drug that could make him feel a little better. But doing that is bad- and it was a wake up call for both of us when we saw his labs. I didn't think I tapered too fast. I went down about a ml a day and then stayed at 3 mls for 2 days and then went to 2 mls. Which is something that I actually do about once every 2 months (but I usually stay at around 3 mls). I don't know... we aren't actually sure what made his blood work so out of whack, but we are going to try and draw new labs tomorrow to make sure these were accurate. Which means more poking on sweet Tripp... ugh.

SO... this of course means that this drug gets put on hold until we can get him stable enough to be able to try it (I'm assuming). It's just frustrating. This drug is no where near a "cure," I'm very aware... but if it can just help even his mouth to feel a little bit better (his mouth is just horrible right now)... I'm going to fight for it. Like an angry momma tiger. Grrr...

And what's my next frustration, you might ask? :)

Bath time.

Like I said in my previous post, I've been having to heavily sedate my little bubba at bath time. I hate this. The sedative I use drops his blood pressure and he trembles and his little teeth chatter. And as yucky as I bet it makes him feel, it usually only lasts for about half of the dressing change. Usually either the first half or the last half... never the whole time. And then lately, after he's finished he's been wanting to play because I guess he feels better afterwards... but he's to sedated to really even stand up. And that just makes me feel horrible because usually after bath was his most favorite time to play because he felt so good.

SO.

We tried bath tonight with no sedative. Just the pain medicine and the anxiety medicine (not for mommy, for Tripp:). He tried to flip over about 3 times when I first laid him down, but then we were able to talk him out of it and calm him down enough to let us unbandage him. And bath was actually okay. It was almost back to how it was before he was really sick. He still cried, of course, but not to the point where it was unbearable.

And then, of course, when we finished- he felt horrible and had no interest in playing.

Really?

I just don't know what the answer is anymore. Everything is trial and error, but it's like nothing ever works the same way twice. His poor little body must be so messed up from so many different medicines. It's probably just plain confused. I wish we could do to Tripp what my grandpa used to say about himself... "Why don't y'all just take me off all this medicine and see what happens?

That's not a bad idea, Paw Paw.... I might try it.

On a brighter note, we did receive Tripp's song and an autographed picture from the one and only Elmo:)

I just made a simple little iMovie with two pictures because that's the only way I knew how to share the audio file that was sent.

He sent us a whole CD of songs, but this version of "Tripp's world" was the only one I was told I could share!

And what Elmo says, goes!:)

Tripp loves hearing his name in the song.

Much love to you, Elmo... much love.

I'll keep you guys posted on what happens with the G-CSF. I'm hopeful. I'm just not getting too excited about it because I know it's only a temporary fix if (any fix at all). But like I said, if it can give this baby just a little bit of relief, it's worth it.

I'm so emotionally exhausted seeing him in pain... being the one causing him the pain by doing what I have to do to keep him as clean and healthy as possible. It's heart wrenching. It really is.

54 comments:

Thanks for sharing, Courtney. Only you know what decision is best for Baby Tripp. Pray for direction and all else will go as it is supposed to. And shout out to Elmo for making Tripp's day! Love & prayers from Texas.

If you step in faith, God will not send you away. You may not get the outcome you hoped for but you won't be left feeling like you made a mistake either. God will carry you and Tripp in the right direction. I fully believe you were chosen for this mission and that you have a special anointing because of it. I pray that you wake up feeling renewed in spirit and that you'll have the confidence today to go further than you did yesterday.

We love you and Tripp. All the way from South Carolina. The King Family

Praying hard for you, Tripp, your family, and for all Tripp's healthcare folks. Praying you feel the rest and reassurance that only God can provide - and praying that the doctors will tap into the knowledge and wisdom that can come only from God.

Thank you for sharing. I can not imagine what you go through everyday but know that I am praying for you and Tripp. I pray that God will make himself apparent to you in every way and give you peace, comfort and strength. Much Love to you both.

Thanks for sharing. You are an amazing mother! I am praying for direction for you in concern to the medications for Tripp. You will make the right decision as moms always know best. I really hope he can get some relief. Such a sweet boy!

Dear Courtney: I just read all about this new GCSF treatment from Sam's mother Marybeth. Could this be the answer for these wonderful EB cuties out there. We can only hope and PRAY. There has to be something to help ease the pain from EB.Love the song from Elmo. That was awesome. You guys are in my heart, thoughts and prayers every single day. Love you guys. Love and Peace Leah and Tabby's Nana

Praying for you guys!!! I hope that he can start the medicine soon and get some relief. And the song from Elmo is awesome. You know that Tripp is really special to get Elmo to sing a song just for him ;)This makes me like Elmo even more!!!!

Courtney - You are the most brave and courageous Momma! Hang in there, we are praying so hard for all of you everyday. Faith will perservere, I am sure of it. How sweet of Elmo to create the Tripp's World song, that one is going to stick in my head, I am sure. Have a blessed day and may God grant Tripp the peace of the day to manage a sweet smile for you. <3 Terry

Courtney- Thank you for the update and giving specific direction for prayers. We will be praying hard here that Tripp will taper off the steroids and be able to try G-CSF ASAP!- And that bath time become a more peaceful time for you both. I wish so so much that there was a more tangible way we could help you, but until God allows otherwise my whole family unites with you in prayer.- my 3 year old too :) Can't wait to let her here Tripp's song- super cool! :) Stay strong Mama Tiger.....

Elmo made me cry too. How sweet!!! We've all heard how we should take things one day at a time...how about one breath at a time? God continue to grant you the strength and grace to handle all you do, and Tripp too!

Elmo sure brought a tear to my eyes too. We are uniting with you in prayer that the steroids will be tapered off, you can do the GCSF trial and the bath time will become a comfort and not a stressful time for Tripp and mommy.May God grant you the strength you need to need to be there for your special little man. He has many people praying for him all around and may angels surround and comfort him.

Gosh, I wish I knew what to say to such a wonderful mom, and woman. You really are an inspiration and so is Tripp. I have a million and one other things i could say, but words seem so minimal. Thank you again for opening up your life to all of us and allowing us to peek into your lives to see such a sweet little boy making such a difference.

i read every word. i have 2 things to say 1- it hurts to read your posts because you cant help but empathize and be just as upset... so if it matters. you arent alone. im sure you know that. but im just saying it. I hear you. and 2- download NeedtoBreathe's new album The Reckoning. I just think it would empower you a little. and touch you. Anyways. I thought of you when I was listening to it. and I think of your little man All The Time. Tripp is the strongest. hands down. strongest baby boy I have ever seen.

I hope everything works out for Little Tripp and that the GSF comes through and does give a little relief. God Bless You both. He is looking a little better in the pictures though. Take care of yourself and that sweet baby

Oh Courtney, I know you want so badly to make him feel better and I pray that you find the answers you seek! You do the very best you can, and know, that at the end of the day THAT IS ENOUGH. It's trial and error for us too, and I can SO relate that to that feeling of trying to figure out what's best for your kiddo.

You're both in my thoughts and prayers. If nothing else, know you have all of us here for you -- to vent and write to -- and when you need us...all you have to do is write and we'll be there. We'll all be here to write to you and tell you how much we love and support you, because WE DO! :)

Sending lots of hugs to you both!

P.S. I think I just became Elmo's biggest fan! That is SO wonderful that they sent him his CD of songs! I loved listening to it -- it's the cutest!! YAY ELMO!

I am one of those people overseas that follows your blog, I am in South America. Your blog has touched me in so many ways and it has brought me closer to God. Every time I pray to God for Tripp and you I get this feeling of peace, he is in charge, he´ll do great things!

Elmo's song gave me tears. I just love that Tripp has touched little red furry puppets. Tripp makes my heart smile when he drums, I showed everyone at work and now I think you have like 10 new followers. Loves Tripp!.

I am once again amazed at your ability to see the positive and to continue to research and find hope and possible answers. You are a true mother who never gives up! I truly hope that he will be able to take the new med and that he is one of the success stories. We sure all know that he deserves to be! Saying my prayers tonight and including your family...Cynthiahttp://www.adreamadoption.blogspot.com

Oh Courtney, I am so sorry that things are so frustrating. I totally understand your fight. I will pray that God will give you and the doctors wisdom. My heart aches for how you must feel seeing your baby in pain every second of every day. I wish I could somehow ease that pain. As a nurse, it is my mission to ease pain and bring comfort and healing so I get frustrated for you that you are not able to get it under control. Hang in there. Keep fighting and know that Tripp is the luckiest baby ever to have you as a mom and his warrior.

Oh my gosh! I do not know how you do it Darling! Reading your posts (and I haven't followed you for that long) always makes me smile. You have such joy (even on your bad days) and love and happiness even when the world is trying it's best to bring you down. I worry everyday about having another child (I have a 16 month old currently) because I'm afraid if something is wrong with one of my children, I wouldn't be able to cope! I guess I'm selfish in that way, I really don't know how I would act, but I would feel defeated. You always have your head up it seems (even though to you it may not feel like you do) and have a positive attitude. I smile through my tears at Tripp's adorable pictures. His story makes me happy and so sad at the same time. He knows nothing else but what he is going through, and we have no idea what that is like!

You, my dear, are beautiful on the inside and out! To have such a positive attitude and be so excited over the little things (because let's face it, that's all that really matters) is just amazing! Keep your head up and know (which you already do) that you have so many great people behind you! Thank you for sharing your story!!!

My heart breaks for you as a mother, and for your brave boy. I just sent up a little prayer for you both. The Elmo song is so awesome! I love that at the end it says Elmo loves you Tripp, Elmo loves you Miss Courtney. Ah! It brings tears to my eyes! You and Tripp are so loved by so many people! Your strength and devotion to Tripp are truly amazing. Thank you for your blog--it is inspiring, educational and beautiful.

Tonight I was doing a little dance on the couch and I thought of Tripp.. so I came to check out your blog and now tears are streaming down my face. What got me today was Elmo.. and the pain. Elmo wrote him a song!! Crazy. I'll say a prayer tonight that after his bath he'll feel like playing again. I know the ups and downs can feel impossible, but you'll never give up and you'll never stop loving. Thank you for sharing your son with all of us. He makes us better human beings.

ps. "Elmo loves you Trip. Elmo loves you Miss Courtney." I posted my previous comment before I listened to the song and when I heard that line, I burst into tears, again. wow.. I mean really, wow. You can hear it in his voice, he means it. of all the things, ELMO (well, OK the actor who is a person who plays him) LOVES you and your child. Yeah. Awesome.

I think you are amazing. Keep praying, have faith and know that God will not put more on you than you can handle. When you get frustrated just know, this is your test and your breakthrough is on its way. I think that little Tripp is the most beautiful baby. I will definetly keep praying for Tripp and for the strength of you family. I will also pray for God to guide the doctors in the right direction to find a cure. Once again you are amazing

This is am amazing story of you and your family Tripp and I shared it with my grand daughter we will keep you in our prayers and I will share your story and tell them how strong you are your desire to be strong for your Mommy and how God is staying beside you and keeping you strong along with you Mommy God bless you all you give me stregnth to carry on no matter what

I wanna start off by saying I'm very sorry for what your son and you and your family have been going through. I read this story on yahoo.com and it broke my heart. I'm 24 years old and live in San Diego, CA and me and my girlfriend have also been going through pain since our 2 year old daughter Ameliana was born with a condition called premarital dwarfism were she will be small for her entire life and have a few setbacks. I just wanted to let you know that your not alone in this world feeling these pains alone I feel your pain and I'll pray for you and your son. God bless you both and we will be in a better place someday in Heaven :)

Let me introduce myself. I am "Byron" from Austin, TX. I just saw your blog and picutres today through a news article. I want to express on behalf of myself, and my family our sincereist sympathy to you and your family. I pray that you are at ease, and I know from what I read that Tripp is with Jesus. I for a 54 yr old man have also shed tears by the heartfelt story you have told. The joy he brought you and your undying love for him. God Bless you and keep you. Yes you both have touched me and I will never ever forget this love. Your brother in Christ and a freind.

A know now more than ever that I will never unless experienced feel the depth of your pain. I would like to give you some words of hope as I may never have the opportunity again. I believe nothing in Gods world happens by mistake, or there is nothing he doesnt allow. God has a bigger plan for Tripp and that is a plan that will oneday be tevealed to you. Some souls I believe are too good for this world and must be at Gods side sooner than others. If there is anything as a mother of two special needs children, I know first hand how these children are already gifts to us by God, and that God in a way lends them to us. Perhaps we have a lesson to be learned from these children more than a lesson in life we could ever teach them. As it was once quoted that our children dont come from us but through us, to teach us the Love of God. You have in your experience taught me to be open to Gods will with courage and not to foght Gods will and be defeated.... Thank you Courtney and Yripp for a lesson well learned, unconditional fearless love.

my heart aches for you courtney. i just found your story this past thursday and have not been able to put you out of my mind since then. when i checked back tripp had passed on. i truly ache for you. you are a blessing - both to tripp and his memory and others as you share this walk of love & faith. i so look forward to meeting both you & tripp one day in heaven. until then, know you are not alone. i will continue to check back and keep you in our prayers (my children and i have been praying for you). God is good all the time & there is a plan in this. May you feel his arms around you extra tight & close right now as he comforts you in your deep grief. much love, phyliss, forest hill, md

Courtney, I just found the story about you and your precious son, Tripp, yesterday. My heart aches for you, but rejoices with Tripp! Only God knows why children are born with such terrible diseases, but we do know that He calls us to be faithful in all things, and that we will not have to walk through our trials alone. I pray that you will continue to be strong in Christ, and be a testament to God's unfailing love for us. I also pray that you will feel God's divine and loving presence, His peace, and that you will find joy in the many memories you have of Tripp. I know that I won't forget my encounter with your story. Thank you for sharing your journey. You have touched many hearts with your sweet, sweet story. May God bless you richly!

Hi Courtney! I heard of your story from the Butterly Fund. Your son touched my heart as soon as I started viewing his pics & videos. It breaks my heart that your precious smart boy has passed. I've been following your story everyday & cry every day. I am a mother of a 3.5 month old baby boy. I don't know how it feels to have lost a child, but I feel your pain. I can assure you Tripp is definitely having a blast in heaven w/ the Lord & watching over you & your family. He's by your side, guiding you to having peace. I don't know him but I love & miss him already ESP seeing play the drums & playing it to any tone. xoxo & may God bless you always.

Tripp was born on May 14, 2009. He was diagnosed with a rare genetic skin disease called "EB." Any type of friction on his skin or mucous membranes causes blisters. They told us he would not live to be a year old. Every day he amazes us by his strength. He is a fighter and with all he has been through, he has never given up. He is the strongest person I know. Tripp wakes up each morning with a smile on his face. Every day spent with him is a blessing. God has a special plan for him. I'm just blessed to be able to witness that plan.

My name is Courtney and I am from the small town of Ponchatoula, LA. Before I became a mommy to Tripp, I worked as a nurse in geriatric/psychiatric. I loved and miss my job, but I loved being a stay-at-home mom much more. My son lost his battle with a serious skin disease in January of 2012. He took a piece of my heart with him when he left. Being his mom brought more joy into my life than I ever thought possible. Tripp taught me the true meaning of love and sacrifice and my life will never be the same.

I am remarried to the man of my dreams and I am currently trying take each day one breath at a time, thanking God for not abandoning me on this journey.

A Special Child

You weren’t like other children,And God was well aware,You’d need a caring family,With love enough to share.And so He sent you to us,And much to our surprise,You haven’t been a challenge,But a blessing in disguise.Your winning smiles and laughter,The pleasures you impart,Far outweigh your special needs,And melt the coldest heart.We’re proud that we’ve been chosen,To help you learn and grow,The job that you have brought us,Is more than you can know.A precious gift from Heaven,A treasure from above,A child who’s taught us many things,But most of all- “Real Love”